Milk Sharing and our Journey

IMG-20160220-WA0002I’m 38 years old and have had 5 living children, my eldest being 18 and my youngest just 4 months old.  In all those years being a mum and struggling with tongue tie, latching problems and failure to thrive babies, even my youngest daughter who was NG tube fed for 16 months, until I had my youngest child, I had never heard of milk sharing.  I had heard stories of old about wet nursing, something I thought was no longer done unless from a third world under developed country, like a backward practice.  I had heard, when my daughter was in the special care baby unit, about breast milk banks and their purpose, but even this was something unheard of until my daughter was in special care.

Why is it that despite statements from the World Health Organisation (WHO), UNICEF and the Centre for Disease Control (CDC), that breast milk is the safest and healthiest way to feed a baby, that in the event of being unable to breastfeed a baby with mothers own milk – having a healthy wet nurse is the next best recommended option, we still know so little about milk sharing?  And to many, it’s still a taboo or something to evoke strong negative reactions?

In the western world, how many mothers and fathers are aware of the high death toll in formula fed babies?  The death toll that is not only reflective of unsanitary conditions in third world countries or water conditions there, but a very real statistic that affects millions every year all over the world and is a direct result of feeding babies formula/artificial milk?  That these organisations state that 1.5 million babies die avoidable deaths each year if only they had access to human milk!

Not one baby’s death or serious illness has been linked to milk sharing, in either tested or untested, treated or untreated, pasteurized or raw human donated milk!  The CDC has a reason they haven’t investigated concerns raised about the increasing trend to milk share, and have a statement about that too.  They said that there were not enough risks posed, not cases brought to their attention, that would cause them a significant enough concern, to instigate any investigation.

Yet they do investigate formula milk, regularly.  They do research and log statistics on rates of illness, disease and death caused by formula feeding.  They give guidelines and rules and regulations about formula feeding and despite the worrying statistics, both the medical profession and the manufacturing companies ignore and break the guidelines, rules and regulations surrounding formula milk!

So, when it comes to being informed about the safest and healthiest way to feed the most precious and important thing in our life, the baby we would lay down our very lives for, most of us are left completely in the dark.

After losing 8 babies and risking my life to have my son, I was so determined to breastfeed.  I had failed with my other living children, I never got the chance with my dead babies, and I was not going to fail with Mitchell!

It was so hard from the beginning, with his tongue tie and I had an emergency c section.  Neither of us were comfortable or finding it easy, but I refused to give up.  My poor baby also suffered severe reflux, colic and stubborn wind on bottles and formula. Mitchell finally had his tongue tie cut at 6/7 weeks old and finally we were starting to get somewhere.  My supply was low, but I bought an Ameda double electric breast pump, lactation tea and fenugreek supplements and was feeling positive.  Then, just 2 weeks after Mitchell had his tongue tie cut, I had my second heart attack and my breastfeeding journey was over.  I felt destroyed, I grieved the loss, am still grieving, it’s so hard to accept I can’t do the one thing a mother normally, naturally, does for her child.  I can’t do the very basic job of feeding my own child.  My miracle baby who I was told I would never get, who I was advised to terminate, my world.

So at this time, a friend shared a link with me on Facebook for the page Human Milk 4 Human Babies UK and straight away it appealed to me.  I just needed to read their guidelines and FAQ, do some of my own independent research, decide how far to travel, look into correct handling, the risks and benefits, decide on pasteurization or raw etc…and then…anxiously make my first post.

At first I was fearful of what my friends and family would think of me, would they think I was weird?  Judge me? Tell me I’m putting my child at risk, would they think that I was disgusting? But I have received such a positive response from nearly everyone.  I think I had about 4 negative responses from strangers on my last post, but over 100 likes, hundreds of shares and I’ve lost count of the offers of support and donations.  Those who couldn’t help have reached out to me with their shared stories and comfort.  I have been inundated with private messages offering me milk for Mitchell by hundreds of women, and we’ve managed to maintain a constant supply of milk.  One woman even wet nursed Mitchell, something I certainly would be happy to continue if we found someone local to us who was willing.

The most important thing I’ve learned, is that all of us are different, both us and our children have different needs, and if I make an informed decision to do what I feel is best for my son, with the least risks, then I’m not doing anything wrong.  There is full, open and honest disclosure between ourselves and the ladies that donate milk to Mitchell. The best indication that the risks are minimal, is that as a mother we would never want to put our own child at risk, and the milk we collect is the same milk our donors are feeding their own babies, making them far more trust worthy, and secondly that the milk is free so they have no vested or financially driven interest to gain from what we are doing.  When we meet, talk to and see in the eyes the care, love and compassion from those who donate, we know in our hearts that they are giving generously from their hearts too.



My story

I wouldn’t even know where to begin telling you everything, so I’ll start by just giving some background.  It’s going to sound tragic and full of doom and gloom, but I want to assure you that I’m a fighter, a survivor and a strong person, although admittedly, like most of us, I sometimes don’t see that.  in fact if you read the events that happen in my life, out of context, it might appear my life is awful.  It’s not.  Yes I have had to overcome struggles and obstacles and trauma, and many crisis, but of anything I cope better during the storm than after it.  Perhaps this is because when it’s happening I’m too busy solving, resolving, fixing and looking for solutions to really feel it at the time.  I mean for example, if a car is heading toward you at 90 mph, would you stand in the middle of the road, trying to think about how awful a situation your in?  Or would you simply jump out the way? If tied to a train track, would you waste time feeling sorry for yourself or focus on figuring out how to escape?  Later, when you’re safe, you might have a cry, the trauma might lead you to jump at fast movements, loud noises and you might get nightmares and other side effects of what you have been through, but those don’t happen until afterward.

Also, despite things that have happened in my life I am blessed with so much, far more than I deserve and far more than I have earned.

I have a husband that tolerates my crazy (he might even love me for it or despite it) and five beautiful and simply put, amazing children who so far have managed to turn out pretty well.  Ok I might be biased, but I’m not alone in thinking they are amazing, everyone that meets them enjoys their company and their personalities and wants to spend more time with them.  They have the usual moments of sibling conflict, delay tactics at bedtime and tantrums, but overall they are well mannered, compassionate, intelligent (including socially and emotionally), loving and affectionate, honest and a good moral compass.  They’ve all been described as tenacious, responsible and determined.  (Except the youngest, he’s only 15 weeks old).

I am financially secure although admittedly terrible with saving our money and do often pay bills late or borrow.  However we always have enough food in the house to feed an army (or to survive in the event of a natural disaster), appropriate clothes and fitting shoes, a warm and welcoming home, decorated to my taste and homely, electric, gas and all the appliances we could need.  I also have great friends and family, I feel well loved, cared about and respected, wanted and sometimes needed.  Really, what more could I ask for?  I’m happy.

The downside?  I suffer with both physical and mental health problems.  This means that despite my happiness with the life I have, sometimes I find it hard to enjoy those things, sometimes I can’t feel the happy, my emotional sensitivities can mean that I can have a negative reaction to even positive events and feelings.  Imagine an allergy to intense emotions.  If things are going really well I become overly anxious and fearful of what might go wrong to ruin it (and in being so fearful, interfere with my own ability to relax and enjoy the positive situation).  I can’t say I’m an optimist or a pessamist, in bad situations I am aware that things can only get better and I can look for solutions and improve the situation, which could be considered optimistic.  In really good situations, I’m aware that things rarely ever stay so good and so I feel it’s important to remain on guard, cautious in the hope that I can somehow foresee anything bad that might happen and prevent it.  I over think everything, my brain is so busy all the time analysing and assessing, so much so, that I tire easily.  Despite tiredness, my thoughts make it difficult to switch off and sleep.  Again, the busy brain syndrome as I like to call it, can be positive too.  I often find myself coming up with all sorts of ideas, to develop myself, to help others with problem solving, to build positive events as a family and for my children, fundraising ideas for charity, creative and crafting projects and many other lovely enjoyable thoughts.  Of course my mind being so busy is still tiring whether the thoughts are of a negative nature or positive nature, and being tired but restless or wired most of the time, isn’t conducive to good health.

As a result (I think) of the trauma I’ve experienced in my life, I suffer with social phobia.  Some use the term social anxiety, but when the level of fear is so great that the thought of talking about gong out alone causes panic attack….I can’t even continue this line of thought now…so we’ll leave that subject for another time when I feel better able.

Hah, I’m thinking, I bet you all want to know what happened that was so bad?  (And then my brain says…Really? You think you’re that important anyone cares?  My answer being that if I were the reader, I would want you to hurry up and get to the juicy bits – urgh I’m such a terrible person for considering someone’s misfortunes ‘juicy bits’, and also just felt a little disgust you might be thinking that about my misfortunes)

Have you figured out yet, why the url to my page is demented ramblings of a mad woman?

Anyway…My background now you have a little insight into why my life is not as bad as my background might have led you to believe.

My writing style might change now as I don’t want to get into an emotional monologue of every last detail (I’m tired and can fill in details of individual events in separate posts another time)

Parents divorced when I was young.  Back and forth between mum and dad until dad got custody. At some point (recently informed) abused (I’m not divulging by who yet – and I was too young to remember myself), then at an age I do remember, abused by someone else (again don’t wish to divulge this information as yet). Had live in nannies (3 over the years).  Dad remarried. Becomes Jehovah’s witness and raises us in the ‘troof’ – sorry I can’t use the word they use as I think it’s a load of bull and that they are a cult that made my childhood miserable, abuse continues through childhood. Bullied at school, miserable at home, life was crap. Still feel unable to go public on here with all that happened and too scared of repercussions if I say anything bad about anyone involved, but when I told about abuse, both parents insisted I said nothing to anyone. I got very angry, hurt and went off the rails when I had always been the well behaved child.

Anyway, I left home young age, worked with horses, ran away to London, bad shit happened, called mum who not seen for ages, she calls police and then they pick me up…get new jobs, get a boyfriend, fall pregnant, run a mile, quit jobs, dump boyfriend, get kicked out, in emergency accommodation, go out and got raped, drop charges before even investigated, self blame, still pregnant, have first child.

Suffer post natal psychosis, severely depressed and suicidal. Can’t tell anyone, end up on drugs, beaten, threatened and forced to commit first ever crime, get caught and eventually ask for help and sort myself out.  (Few gaps but that’s the essence)

Years of hell and frustration with daughters behavioural problems, get help, turns out I was just a really shit mum, sort myself out which had positive impact on daughter.  Daughter diagnosed with duplex kidney and refluxing uretur and has surgery. (I took her doctors for years being called neurotic mother when I was right all along)

Relationship with mum – on and off, turbulent and very painful.  Relationship with dad – very controlling and demoralizing.

Have an affair with the fiance of the lady (friend) who’s children I’m babysitting (lots more beating myself up on what an evil person I am) increase self harm (forgot to mention did that since age 15) as punishment (someone has to) until eventual suicide attempt.  Eventually all comes out, shit hits the fan.

Date a smack addict then another guy.  The new guy beats me up in front of daughter when she’s 3 and leaves me for dead, he then dates the lady (friend) I betrayed.  (Karma for me) he smashed up the car belonging to a gangster I once knew and in fear I’ll be blamed I start selling everything I own so I can run away.  Mum finds out, sends me to aunt in Yorkshire for 3 weeks then aunt in Norway for 5 weeks.  I find out from my dad on my return my mum had said she was going to try to get custody of my daughter whilst I was out the country (he advised get against it and she took the advice)

By this point you can imagine I feel completely alone.  Bleak.  Abused, raped, beaten, abandoned….alone


Anyway long story short (I’m tired now – 3:22 am here)

I had 4 more children, things were easier with them and I made many good friends on my journey who I would without hesitation trust with my life.

Eldest daughter has dyslexia and dyspraxia and a floating lower moiety (half a kidney detatched and floating not being used as too badly damaged), second and third daughters healthy, youngest daughter had problems in pregnancy and birth which I’ve talked about in another post (summed up, difficult pregnancy, failed placenta, feral hypoxia, died during birth, resuscitated, svt after birth, shocked and treated, 3 months in scbu, (during this partner removed from family home for domestic violence toward me for 6 years that spoiled over onto children the end of my pregnancy), ng tube fed for 16 months, hypotonia, hypermobility, severe oro motor dyspraxia, glue ear that cause severe hearing impairment, learnt bsl family sign, gromits) after lots of hard work with her she beat prognosis and wouldn’t even know there was ever anything wrong, youngest son awful pregnancy, they wanted me to terminate, specialist pregnancy care, fetal distress, emergency c section, tongue tie and Nystagmus.

Childhood abuser admits the abuse toward me from childhood when my son is a week old, moving toward closure, peaceful resolution and forgiveness.

Lost 8 babies after my youngest daughter and before my youngest son, recurrent. Poppy’s story is in another post and the poem I wrote for my triplets is in another post. No mother should have to bury her own children, this brings me so much sadness and I don’t think I can ever get over it or stop grieving.  I have to live with that always tainting moments of happiness.

Dotted in my story are fundraising for charities when I could and felt well enough.

2 heart attacks in one day that the hospital refused me pain relief then gave me gaviscon and tried to discharge me (2014) luckily I refused so was still there when I had second heart attack and was blue lighted to another hospital for emergency surgery.  A stroke February 2015 just a month before I fell pregnant with my son, a small heart attack Xmas day last year when my son was just a month old, heart failure after I had him, gall bladder stones, a leaky valve, arrhythmia, tachcardia, hypotension, left ventricular diastolic dysfunction, right ventricular abnormalities, enlarged left atrium, vit b12 deficiency, vit d deficiency, diabetes, diabetic neuropathy, suspected rheumatoid arthritis, sciatica, spd even when not pregnant, and a whole host of physical symptoms (pain).

Mum died jan 2014 just 6 months after I reconnected with her.

Oh and social services involvement on and off over the years but once lied to try to put the children in care, not during the times where that would have been appropriate possibly, but after I had my life together!!!!!

Luckily I keep evidence of everything and the social worker got caught out in the web of lies he created.

I now home educate my children.

My eldest is now 18 and never ceases to amaze me, she passed all her gcse’s grade c, achieved 2 diplomas before leaving school at 16, another diplomas on leaving school and now doing level 3 childcare and education apprenticeship, volunteering for young carers and idid charity, has st John’s ambulance first aid, safeguarding certificate and is so well balanced. My 14 year old is identified as a gifted and talented child, goes to college one day a week to study small animal care, heading toward level one diploma, received distinctions in complete work to date, been offered a fill time course next year and hopes to be a vet. She also volunteers at stables, sent a poem into a competition and received a certificate and offer to be published and been offered a part in a play she auditioned for, she’s also in army cadets.

My 8 year old is amazing me with her reading comprehension and spelling as well as her creativity and my 5 year old who would be in reception now, astonishes me with her math skill, she can add, subtract, multiply, read and understand math symbol and sums and both of them just show so much enthusiasm for learning (8 yr old says she’d like to be a teacher and 5 yr old says she wants to be a doctor)

I’m absolutely confident that my children will be whatever they decide to be.

Me?  I have some resentment at not being able to work, I get sorry for myself, beat myself up, punish myself…but I’m working on learning to accept the way things are and I have a new dream to one day live off grid and self sufficient, where I no longer have to rely on others or feel like a burden to society.

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